Lots to update…We recently had a craniofacial team meeting at Shands. I pressed for an idea of what they expect as a plan for Wes long term. Most of the time, we only get the immediate need to know information. Of course those of you who know me, know I need to know everything. I also totally understand there are no concrete plans. At this point I also understand much of the medical lingo.
Here is the plan with a strong emphasis that there is nothing definite. Wes will need some surgeries in the future, I want him to have a team who can explain this plan with confidence after much experience. 5 to 7 years old, he may have surgery to bring his eyes closer together, build a nasal bridge, and address his midface retrusion. This may be staged, which would involve multiple surgeries and will also involve many surgeons. There are many questions to be answered before proceeding with any of these surgeries. Before kindergarten, scar revision and minor work to his nose. Around 9 years old, a bone graft from his hip to his gumline. His teenage years will follow with surgeries to revise.
During this appointment we discussed a gene mutation, MTHFR, with the genetic counselor. Turned out there was some information in his chart that had not been discussed. Follow up did not happen as it should have. It looks like this month we are going to be able to pursue a more definite genetic diagnosis. Although some may not understand this, I want to know his diagnosis. We continue to get these “isolated” diagnoses without the entire view. This was again apparent with Wes’ last x-ray to investigate a bulge on his back. Now he adds another doctor to the list to monitor scoliosis. Waiting for results and getting these surprises are heart and mind wrenching. A genetic diagnosis would give us so much information and beneficial connections.
It appears that the most pressing and immediate issue is Wes’ speech. He does have nasal emission, which means surgery to address Velopharyngeal insufficiency. He is doing well with speech therapy, but if his palate is not closing appropriately there will sounds he will not be able to make and he will continue to have nasally speech. It breaks my heart to see him get frustrated when people are not able to understand what he is saying.
He is having a videoflorscopy that I thought would determine whether he needed surgery. Instead they were ready to schedule surgery for June 25th, because it is obvious that he needs surgery. Yes, head spinning quick! It will not be happening that quickly, since Wes’ neurologist has ordered a two day EEG.
A few weeks ago, Wes had a very scary episode that appeared to be a seizure. He was running around, eating cake, and acting completely like a typical 3 year old. We went out to eat and all of the sudden his whole mode changed. First he wanted me to hold him, suddenly felt fevered, breathing changed, and then seemed very unlike himself. We quickly headed to the house. In the rear view mirror, I watched his eyes begin to flutter then roll back, rapid breathing changes, and nonresponsive. As I was unbuckling him, he began vomiting. Immediately after, he was again responsive, yet very agitated and clinging to me. After a quick bath, he went sound to sleep. The next day, Dr Curry checked him out and all was fine. Same week we headed to the neurologist. She was concerned about the way Wes stares at the ceiling and this episode, which prompted a two day EEG to monitor him for seizure activity. Concerned to see how this is going to work. Two days of his little head covered with probes and then wrapped securely with a monitor on his back and hooked to a camera when possible.
June 23rd and 24th are back to Shands for a videoflorscopy, endocrinologist, genetics, and ophthalmologist. June 26th starts the two day EEG with no results for weeks. July 16th was scheduled to be neurosurgeon appointment, but he needs clearance from the neurologist, which will be delayed now. July Wes will also be going to speech camp in Panama City Beach.
In between running to appointments, we plan on enjoying an active summer and a potty training adventure. I plan on enjoying my boys.

Thank you to everyone who made a generous donation of pop tabs possible for the Ronald McDonald House. As you can see the donation filled up an entire donation house. We were told they raise around $6000 each year for the house in Gainseville just from pop tabs. This simple donation helps make a difference for many children and families during a very difficult time. The Ronald McDonald House has provided us with so much more than just a place to rest. Keep saving your tabs. We plan on making a donation with each visit to Gainseville.

My tough little tiger is 3 years old!! His excitement was bubbling over as he celebrated with everyone. Cupcakes at daycare and he built his very own birthday cake a few times during speech with Ms. Elizabeth and then cupcakes at home. His favorite part is singing happy birthday, which he loves to join in on and sing to himself. Saturday after his birthday we followed up with a bubble birthday party at the house with his buddies. Wes was more interested in washing his hair in the 20 gallon bucket full of bubble mix and actually took a scary head first dive at the end of the party. Amazing, 3 years have passed. Wes has officially transitioned from Early Steps to the Franklin County School System. I sat in that IEP meeting with knots in my stomach. Yes, he was only staffed in for speech and OT eval. His vision will continue with Lighthouse and Ms. Jenny. It was not what he was staffed in for, it was everything that brought him here. This signifies the challenges and differences in Wes life.

Today I sat on the back porch in total awe of the blessings that fill my life. I have searched my heart for words to explain the feelings this past week brought, which explains the overdue post. With three boys, yes I have been here before...yet I have never truly been here before. For anyone to understand, they would need to know where Wes has been, the challenges and strugtgles we have seen him fight and overcome, the days and nights heavy with pain, unknowns, fears... After everything not only did Wes turn 3 years old, he celebrated 3 years of life with a beautiful smile that matches is loving nature.About four years ago, I tossed around cliche's with little thought. Now I realize that then I only had a glimmer of understanding of those words. There truly are not words to explain where I am, to explain life. Each year around Wes' birthday, there is a flood of feelings that overcome me. Each year naturally Wes' birthday brings excitement, a party, song, another candle added to the cake, it also brings realization of strength, beauty, determination, and the power of love.

Pictures will soon follow. Tonight I just wanted to give an update on Wes' recent trip to Shands. Dr. Collins is looking at sinus surgery for Wes as a last resort at this point. He had a swallow study, which again shows a beautiful swallow and him protecting his airway like a champ for the first portion of the swallow study. He had a thin liquid, then pudding consistency, next barium cracker sandwich, and last he washed it down with thin liquid. The last step revealed an issue. nasopharyngeal (np) reflux. Basically the liquid he was drinking washed up into his nose around the back of his soft palate. The soft palate should met the back of throat closing off air and food from his nose. It looks as if his soft palate is not meeting the back of his throat, because it is not long enough or it is not moving properly. Both issues that some children face with cleft palate and requires surgical repair.
The speech pathologist did not see any aspiration. After I left my mind began to race, so I called back and discussed the possibility of Wes aspirating as he is trying to coordinate breathing and swallowing during these episodes of np reflux. Many times I have seen liquid coming from Wes' nose and him taking these quick mini swallows and trying to catch his breathe. The problem with catching an episode of aspiration like this is the length of time a child is exposed to radiation from the videofloroscopy. She agrees this is a very reasonable explanation for his aspiration.
Otherwise Wes trip was again left us with no answers or plan. Dr. Collins wants Wes to be seen by a GI doctor. Wes was diagnosed with reflux as an infant, but this has not been an issue and appears to have resolved. Today I emailed questions and faxed the swallow study report to Dr. Vicari, who repaired his palate to get his opinion on the next step for Wes.
Tonight was Wes first growth hormone shot. The thought of this night has been weighing heavy on my heart for sometime now. I stood there with the needle in my hand, my heart in stomach, and my breath held. Wes was asleep, but quickly woke up screaming. Poor little guy, hate to think of this nightly routine. Anyone who wants to know how big the needle is or at any point refers to it as a little needle, just remember it is big enough to be a NEEDLE.

My boy is home and doing well. Wes was actually discharged Saturday night. Getting to a computer to update was not possible, since all of the diaper changes and showers of vomit finally caught up with me Saturday night shortly after arriving home. Then I managed to rush through the virus and head to Gainesville for Wes' appointments Tuesday. Of course it has been a busy week here at the Taranto house. I will post more soon with updates on his latest appointments.

Last Friday night we thought Wes had caught a stomach virus. Friday and Saturday night were rough for Wes, filled with vomiting and watery diarrhea. (quick dashes to the bathroom, changing sheets, looking for a towel to sleep on...) Sunday, Monday, Tuesday, Wednesday the vomiting stopped, BUTT the other end did not. He stopped eating and drinking. We were relying on his g-tube, even with this he was not holding on to anything. He lost 2lbs in less than a week. Thursday Dr. Curry felt it was time to admit him to pump up the fluids.
So here we are at Tallahassee Memorial Hospital. He was admitted Thursday afternoon. Poor little guy was already beaten down and had to endure four attempts at an IV and two attempts to cath him. His veins kept collapsing. Last night and today he has been getting some much need fluids.
Unfortunately the diarrhea may continue for up to 2 weeks. So far stool cultures from Tuesday are clear. Last night blood cultures were drawn and new "samples" taken today.
My little smiling guy did not have that shine in his eyes today. This has drained everything out of him. He did not even have the energy to enjoy or sing along to the singing gram Miss Jenny sent. (Thanks!) Just before going to bed he did seem to perk up and even ate 1/2 of a banana and a little jelly toast (ok, at least the jelly). He of course did not consider it toast until there was jelly he could lick off.

Did you think you were going to need to make a trip to Apalachicola to see what Wes is up to? LOL!! Yes, it has been awhile. This is going to be a long update, first a quick medical run down. Wes still has a lingering sinus infection. At this point, I have lost count of how many days he has been on antibiotics. Antibiotics have been a constant for Wes since he was born, but with this sinus infection he has cycled through many 20 day rounds of strong antibiotics without much change. He is now trying a lower daily preventive dose. His ENT in Tallahassee has referred him back to Shands to Dr. Collins, ped ENT. He would like to consider surgical options and has scheduled a stealth CT scan for Dec 19.

Wes has added another doctor to his list, Dr. Wagner, a pulmunolgist at Shands. Dr. Bowman, neurosurgeon, wants Wes followed because of a craniocervical junction defect. (three times fast) Yes, you know my little man has to keep the doctors on their toes. Dr. Bowman’s explanation, “Wes has a very UNIQUE head!” Little background infomation, Wes' midline defect includes a craniocervical junction defect at the base of his skull (similar to Chiari Malformation) and neck instability. Quick explanation, bones in the middle of his head formed in angels that leave little room for the rear portion of his brain and brain stem. This area controls breathing and swallowing, so there is some alarm considering he has aspirated without clear explanation and his breathing has always been an issue. This will be something I will need to monitor, which should be easy considering I will be worrying rather than sleeping deeply. Overall Wes had a good appointment and Dr. Wagner will follow him in 8 months.

Three weeks ago, we stopped all g-tube feeds. He has loved the freedom of no hook ups! He has also discovered chocolate. His weight has dropped a little, but hopefully with time to adjust this will change.

Last month Wes had a cortisol and growth hormone stimulation test. His cortisol levels were normal. He failed the stimulation test with significantly low levels. He needed an 11 to pass and Wes' level never made it to 3. Now we wait for Dr. Miller, ped endocrinologist, and Dr. Bowman, neurosurgeon, to discuss starting Wes on growth hormone. Typically growth hormone is associated with height only, when it actually can affect much more, ie stamina, sugar levels, muscle tone, reflux, resistance, overall well being, increase risk of seizure…this is not one of those medication that come in bubble gum or grape flavoring, instead it is shot given every night. As much as I hate the idea of daily shots, we will do what is best for Wes.

Wes has also seen the ophthalmologist recently, who would like to consider surgery to move his null point in six months. Basically Wes’ null point is the point of best vision. This is why Wes often holds his head chin down or tilts his head to the right. Before making any decisions, I feel we need to explore a surgery that would both move his null point and dampen his nystagmus. Of course there are very few doctors in the US who perform this surgery and most ophthalmologist are not familiar with this surgery or the positive outcomes. Wes’ local ophthalmologist does not perform this surgery and discourages seeking any info on this surgery. Dr. Hertle in Pittsburg appears to be an expert. With everything Wes has faced, exploring the surgery options has not been a focus, but one surgery is optimal, so this must now become a priority.

Now for the fun!!!! November, we were able to take a much overdue family vacation to Disney World in Orlando with our family, my mom, brother, sister in law, Taylor and cousin and family. “To infinity and beyond”, sounds so sweet from my pint size super hero. He absolutely loves dressing up as Buzz Lightyear. He felt completely different about meeting Buzz Lightyear at Disney. As a matter of fact, he screamed in fear at every character that moved and was taller than 1 foot. To make sure Wes and Taylor did not want to be near the characters, we paid for an overpriced breakfast with Mickey, Pluto, Lilo, and Stitch. They were not able to eat much breakfast, as there is really no way to make sure these characters kept a safe distance if you are distracted by food. Chase and Brandon were able to eat and loved hanging out with Stitch. Brandon even brought home a Stitch to sleep with.

The boys enjoyed every moment of the trip and believe me we packed the day full. Who ever thought vacations meant restful days, have never taken children to Disney. My body may have been dragging, but my heart was recharged and my stomach well churned. All from good combination of Space Mountain, Playhouse Disney, Mission to Space, Buzz Lightyear Space Ranger, Mountain Everest, It‘s a Small World…We basically did everything! Family favorites, Chase and Brandon liked Space Mountain, and Wes liked Buzz Lightyear rides. I loved every moment!

Pulling up to the hotel, I almost could not contain my tears. The boys could not have understood how special this trip was for me, for our family. Our journey over the past few years have brought challenges that have weighed my mind and heart with fear and doubt. There were moments when I doubted a trip like this would have ever been possible. Yet, there we stood with a little guy who does not let anything get in his way of having FUN and loving life. Everyday, no matter the challenge, my little man gets up and puts on his superhero smile. Someday I will let him know he has been mommy’s little superhero. I have been blessed with 3. Seemingly unchanged it is through different eyes I now see the gift of love my life has been blessed with.

Overall Wes is doing really well, which is ironic when I consider the events since my last post. This week he will finish his second 20 day regiment of antibiotics. Total with antibiotics prior to surgery and post op Friday will be 60 days of antibiotics for sinus infection.

He is really enjoying all the benefits of his new palate. Mom is cautious (nervous), so there are a few things off limits. For now he is fine with the limits, especially since he busy with all the possibilites.

Ever wonder where you go for your first cheeseburger? Wes can point the way!!

Yes, that is Wes' favorite vegetable on his nose, ketchup.

How sweet it is...

Palate Surgery Aug 2008

Here I sit in front of my home computer with a little sleepy guy in my arms. Feels so good to be home...even more amazing knowing my baby boy is over such a huge step. Before we left for Chicago, Wes told his brothers his palate was in Chicago. Now he is at home with his palate. He is eager to try it out with food, but then changes his mind as the food gets close to his lips. Still a little nervous, but yesterday had his first melted popsicle. It was frozen when I gave it to him...just took awhile to work up the courage to put it to his mouth. Guess you could say we are both a little nervous. Baby steps to keep my baby healing and away from hospitals.

Wes is recovering well...issues with pain only during the night and first part of the morning. He has been making sure everyone on the second floor knows his pain. Once he is up and out of the funk of the morning, he is full blast.

We had a disappointing appointment yesterday...3 hours and we never saw THE DOCTOR. After a 2 1/2 hours waiting we did see the resident, Dr. Kim, who was in surgery with Dr. Vicari. There really seemed to be no other options as Dr. Vicari was leaving to visit his son today and I want to speak to someone who was involved in Wes' surgery and needed to know how his palate was healing before leaving. He said that Wes' repair looks wonderful! No area of concern at this point and everything is healing nicely. This doctor was very thorough and explained things well, but after traveling from Florida to Chicago for a surgery that was strongly stressed to be done by this specific doctor who knows the complex details of my son's extensive medical history...Joey and I were very disappointed and aggravated to say the least. For a little guy, Wes has HUGE medical file!

This morning I received a phone call from Dr. Vicari on his cell phone, as he was on the way back into town to see Wes. He was very apologetic. It appears the first receptionist failed to page him before she took her lunch break and it was only after we complained two hours later that he was paged. (after he had already headed to clinic in another town)

He also feels great about Wes repair. His repair and the incision to relieve tension are healing nicely. No signs of fistulas! Wes sounds very nasally right now, which Dr. Vicari reassures us is a good sign for a cleft palate repair. He is having some difficulty breathing at night, which is somewhat to be expected with the swelling, but also likely to be an issue after the swelling. Next step would be to open up his nostril. This should really help his breathing. As of right now, he is trying to breath out of his nose which is blocked by a deviated septum on his open nostril and obstructed by a collapsed nostril on the other side.

I will post some pictures later. Wes has found a little g-tube buddy, Cooper. They have been keeping the playroom busy. I will try to post some pictures later. For now here is him and his Diego. Sure Libby Kate hopes his Diego will keep him from snatching her Dora, but then Diego might need a friend!!!

Quick update...Long day yesterday for our little man. He was up after a dose of Tylenol w/codeine for about 30mins to play w/ his Chicago buddy. After she left his little mind and heart want to stay in the playroom and play, but his little body needed a rest. He was determined to stay, but stopped for a second to lay his head on my leg and almost immediately was out. He spent the rest of the day sleeping. At this point rest is good, sleeping through the pain and allowing his body to work hard healing.
Today he started the morning with a little fever, but a dose of meds and a quick nap gave him a little burst of energy. He was up and colored a picture. Finished his first picture and has now started throwing up. Back to resting for now!

Surgery went very well. Slow update with my arms full of love trying to comfort my little man in anyway possible. Wes is sitting on top of Chicago in the 9th floor, but not feeling on top of anything. Poor little guy is swollen and hurting. He has slept most of the day, which is good. Typing this with one hand as the other is clutched by my precious boy. Good news is Dr. Vicari was able to close his entire palate and do some work on his gumline. How much will remain a mystery until Wes is ready to show us.

Here are a few pictures. No they are not fun glimpses of the day, but just to let you know he is out of surgery and on his way to recovery. If you know Wes, you know why I had to share this picture. No matter how his day is going, he is going to kick his little arm back to relax. Otherwise his awake seconds are spent watching BuzzLightyear and LigthingMcQueen.

This morning after Wes was finished looking at his book, we looked through my camera. He loves looking at his family and friends, but you can imagine his favorite person to see Wes. He has decided that he is not Weston, just Wes. Thought I would post a few pictures and a video of things he would rather be doing right now. Wes went back around 9:30am and surgery should take about 2 hours.

Here I sit the day before a much anticipated surgery. Looking back on October 12th 2006, when Wes' palate repair was originally scheduled, I thank God I did not know all that was to come. Even though I can remember those late nights during my pregnancy and during Wes first year, wishing I knew what was to come, what the future held for my little man...a fast forward button for life. Now I realize it is little by little, day by day we face challenges and overcome. It is not the whole picture, yet the here and now that we rise above.

Wes was such a little ham today. He hopped around the hospital with his cute one leg tigger jump, talking and flirting with his nurse. She said he was the best little patient all day! Of course he was, that is my little man, full of personality, joy, and love. He seems to have a beautiful gift bringing this to those who meet him.

Tomorrow is huge day for Wes. More than a surgery, a huge step that will open doors for him. Dr. Curry wants a picture of him eating his first cheeseburger...how amazing this surgery will be for him in so many ways. To actually give him food and drink and not fear every moment that he will aspirate and end up back in the hospital and to hear his new little voice. Today I teared up buying him a shirt with a sippy cup and the words "half full". We have been asking him where his palate is and with that precious little voice, he says, "in Chicago." Tomorrow Dr. Vicari will give Wes his palate!

There is really no way to explain the emotions I am feeling. Ironic a year ago this very month Wes faced a huge surgery and yet somehow now we ride such a different roller coaster of emotions. The tears that have filled my eyes so many times these past few days are mixed with joy, excitement, pain, fear, anxiety...all in view of what has passed and what is too come. Today looking back, I am in awe at God's power. He has brought us through and filled our lives with love and support I never could have imagined.

Surgery time is at 9:45am, again I ask that you wrap him in a warm, soft, blanket of love and prayer.

A little trip in the rain today!

Tomorrow night Wes will show the doctors what an amazing difference having his tonsils removed has made. His breathing has improved so much. He will be having a sleep study at Shands. There is alot riding on this study, this will determine if he will be able to proceed with his palate repair August 22nd safely. While we are there he will be seeing Dr Miller, his wonderful endocrinologist and getting another opinion from the pediatric opthamologist.
Wes has been staying busy with Mrs. Elizabeth and Mrs. Marilyn for speech therapy and Mrs. Jenny for vision. He is such a little ham, loves the attention.

Amazed at how well Wes is doing. Shortly after he came out of surgery, he wanted to get out of bed. He was in the playroom on morphine! His breathing that night was already improved. He was discharged yesterday morning. Shortest hospital stay yet! He is talking and wanting to eat a little by mouth. The ENT said his tonsils were HUGE! He did leave his adenoids. He said the adenoids may not help much with his speech. His anatomy there is also very unique. His adenoids are in the same area as one of his enceph repairs.

Really doing much better than I had anticipated. Guess I have the mind set of preparing for the possibilities. We are going to see a little of Chicago...the part outside of the hospital. Yesterday afternoon we walked down the road to Oz Park. Today Shedd Aquarium, which was crazy. Best part of the day was our walk back. We took Tristans' advice and stopped for the boys to play in the water. Don't worry we are making sure Wes gets rest and takes it as easy as a 2 year old is willing.

We have arrived here in Chicago! Wes is suppose to be at the hospital at 7:30am tomorrow morning.
He is fired up tonight, playing tag with me and Brandon. Love that sweet little voice. He has started saying so much. Really worried that this surgery will be yet another set back in speech. His favorites lately, "I had it first, it is my turn", "Ligthing McQueen", "Hot dog, hot digitty dog", I spy, and tonight, "your it". You can see he is covering his ground with his older brothers on what he needs to say.

At this point, I am sure everyone would like an update on Wes. His palate surgery has AGAIN been delayed. Hate to even stop and think about the original plan to have his palate closed at 8 months old. Now with the passing of his second birthday, he still waits.

Wes has been a busy little man since Feb. He was hospitalized for aspiration pneumonia in his right lung, then two months later meningitis. He just finished another round of antibiotics for aspiration pneumonia in his left lung. For the past 5 days he has been spiking high fevers. Yesterday after a battery of blood test, his fevers dropped to low grade and he has been fever free for about 12 hours now. The high fevers every few days seems to be his norm lately. Dr. Curry did some blood test on his immune system and is giving him a booster shot tomorrow morning. Poor little guy...

Here is a picture of Wes during one of his weekly visits to the best pediatricians in the world, Dr. Curry!

As usual he is not letting much hold him down. Biggest challenge is keeping him from eating orally, but with the bouts of aspiration pneumonia we have to stay safe and get him through these next two surgeries. His palate surgery will blessing.

Wes' ENT in Chicago has really caused some frustration. His local ENT has been sharing her concerns with him concerning Wes apnea, since May 07. He has dismissed everyone's concerns with Wes' breathing. I was really discouraged in Feb when I mailed a dvd overnight of Wes' breathing to him and scheduled an appointment. When Wes ended up in the hospital instead, this ENT could only find the time to send his resident to talk with me, who knew absolutely nothing and had the same to offer.
The ENT in Chicago finally has decided to take time to evaluate Wes' breathing. No problem, he has only waited until the plastic surgeon and neurosurgeon set a date for his palate repair and saw this video. There have been so many opportunities for him to discuss this plan with us. Wes local ENT does not feel comfortable doing his tonsillectomy considering all that Wes has going on, which leads us back to Chicago.

Wes is scheduled to have his tonsils removed June 18th and palate repaired August 22nd, pending a sleep study. For now we prayer for his lungs to clear and him to be healthy and strong for these next two surgeries. It is going to be a long summer without Cheetos!

Who can resist those beautiful blue eyes!!! Had to share this beautiful flyer. It is for a fundraising event for FACES. This organization has been a wonderful resource in our journey. Thank you to everyone at FACES! Special thanks to Stephanie who has lended her ear through some trying times.

There are many ways to help this organization in their efforts to assist those who have craniofacial differences. This is one organization that you can trust benefits those facing medical challenges, like my little man.

http://www.faces-cranio.org/

Wes is home and doing well!Typing this post in what should be just hours from Wes palate surgery. Yeah the surgery that was originally scheduled for Oct. 06, when he was 8 months old. Instead the surgeons feel it is best that Wes have a month to recover. No new date yet.